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CRPS

Happy Disabiliday – A Letter from A Canadian CRPS Warrior

Published on April 25, 2017 under Guest Blogger for RSDSA
This Disabiliday blog was originally featured on Pain Matter's website. It was submitted to us by Paula to share with our wonderful #TheTuesdayBurn community. We hope this helps inspire all those living with disabilities, especially CRPS/RSD. "You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post: Let’s Talk To An Inspirational Young Canadian Woman, Paula Orecklin, About CRPS, Sativex, Physiotherapy and Neuroplasticity (There are additional References and Links at the end of this blog post.) This week, Paula sent me a beautiful letter to share with all of you (see below).  Paula’s letter contains a very important message for everyone, on behalf of all people living with disabilities including chronic pain. I feel delighted and honoured that…
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SPPAN Tracking State Issues- How Can We Help CRPS/RSD?

Published on April 18, 2017 under Call to Action
This blog was originally titled "How SPPAN Went From Tracking A Few State Issues A Year, To Monitoring 1,900- And Changing the Rules in Several States." It was initially posted on Connectivity. You can click here to find it in its original form. At RSDSA's Nashville conference, pain-related legislation was a major hot topic. Some of the most frequently asked questions were about pain legislation and how to move towards change. RSDSA was offered this blog by CQ Roll Call to help explain a little bit of what SPPAN does and how one person can make a difference. How can this help people with CRPS/RSD? How can we move towards progress? The article starts below: "Here’s how one organization (for…
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RSDSA Finds Great Success At Nashville CRPS Conference

Published on April 11, 2017 under Events
By Samantha Barrett, Special Events Coordinator As we regroup after a fabulous weekend in Nashville, Tennessee, we thought it would be nice to do a quick recap of the events that happened this past weekend. An amazing group of people with CRPS, caregivers, and supporters joined us to make this one of our most successful conferences yet! This past weekend, RSDSA staff and board members traveled to Music City to host Treating the Whole Person: Optimizing Wellness at Opryland Resort and Convention Center. This was our first time to Nashville and excitement was abundant. After months of planning, we couldn’t believe how quickly the event came up. Upon arriving at Opryland Resort and Convention Center, our jaws dropped. We never…
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The Impact of Mindfulness on RSD/CRPS

Published on April 4, 2017 under Guest Blogger for RSDSA
By Guest Blogger Emily Salser Nunez How important is mindfulness and CRPS/RSD? According to Emily, it is crucial. Read Emily's story and then see how being mindful helped her.   Eight months after fracturing my small toe in a simple misstep, I was diagnosed with Reflex Sympathetic Dystrophy (RSD).  I had never heard of this disorder when my podiatrist concluded this was what was causing my excruciating pain and inability to walk.  I knew something was seriously wrong, as over time my foot felt like it was burning and became bluish-black in color.  So, at first, I was relieved that I finally had an explanation for what was happening to me.  But then the podiatrist looked at me with deep…
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The CRPS Wedding Chronicles- Almost There!

Published on March 22, 2017 under Stories of Hope
By Samantha Barrett, Special Events Coordinator Getting closer to the wedding date, Samantha updates everyone on some of the tips she has learned through the wedding planning process with CRPS. What questions do you have for Samantha? She can answer them in the next edition! Hello friends! It’s been a while since I’ve update you on the wedding chronicles. We are just about 3 months out from the big day (I know, crazy, right)? But I’m getting extremely excited, although a tad overwhelmed. Recently, my health hasn’t been the best it could be. My CRPS has gone into occasional flares, but the EDS and POTS have been what is really affecting me. But the EDS contributes to CRPS pain for…
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You Know You’re a Hospital Kid When… Life with CRPS

Published on March 14, 2017 under Guest Blogger for RSDSA
By Guest Blogger, Melissa Lovitz This piece about being a hospital kid, especially one with CRPS/RSD, was originally posted on The Mighty. When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome (or CRPS) landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count. When I was in high school, most of my inside jokes were with physicians who liked to dance every morning. I got…
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Chronic Pain and Family Responsiveness

Published on March 7, 2017 under Guest Blogger for RSDSA
By Guest Blogger: Laura Lustig, PhD Originally Titled: "Chronic Pain And Family Responsiveness: Stories Of Courage In The Face Of Unimagined Change." There are many types of chronic pain experienced by people all over the world, many of which have been well recognized and have treatment regimens that are prescribed regularly by doctors and allied professionals. To categorize the pain of Reflex Sympathetic Dystrophy (alternately referred to as Complex Regional Pain Syndrome) as chronic pain is almost a disservice. To begin with, people suffering from this syndrome go through indescribable pain that can strike without warning and become unmanageable. Then, there is the agony of waiting for someone to diagnose it correctly because, unlike so many other types of chronic…
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Rare Disease Day 2017: A Rare Game for the CRPS/RSD Community

Published on February 28, 2017 under Events
Today is February 28. It is Rare Disease Day!  This is a wonderful day for educating people about rare diseases and conditions, including Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD). This blog is a little different than what we typically do. We want to help educate people about CRPS/RSD, while helping people find different resources on our website! What could be better than to organize a scavenger hunt?! You will have until Sunday, March 5, 2017 at 11:59 p.m. EDT to complete this scavenger hunt and email your responses to SBarrett@rsds.org. People with 100% correct responses will be entered to win an RSDSA travel mug. The winner will be chosen via a random selection tool online and will be announced…
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How RSD Potentially Stole My Dreams- Cope With RSD/CRPS

Published on February 21, 2017 under Guest Blogger for RSDSA
By Guest Blogger Tatiana Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope. When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands…
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Painting CRPS: A Nurse’s Reflection of the Bible and Its Correlation to CRPS

Published on February 14, 2017 under RSDS General Info
Matthew 6:26 inspires artwork of a nurse living with Complex Regional Pain Syndrome (CRPS). This blog was originally posted on this website. Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, "My rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it." Thank you for the opportunity to share my artwork.…
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